Yes, He's 76, But He's More Than A Shadow On A Test
Was age the reason docs jumped to a deadly—and incorrect—diagnosis?
Posted Jan 30, 2015
Our latest trudge through America’s healthcare system started in the middle of the night and involved doctors in two different states, including at one of the country’s most highly rated hospitals. It ultimately spread to an increasingly broad group of family and friends who all rallied around us as Joe faced fairly certain death from bile duct cancer.
Except that he didn't have bile duct cancer. The doctors—both the local specialist and the out-of-town second opinion—were “reasonably certain” he did, though. And we told our children and siblings and friends what they said. As it turned out, the simplest answer—gallstones—was the correct one. But it took six weeks to untangle the mess of tests and analyses. And, sadly, too many of the doctors we met completely lost sight of the humans in the room.
They all asked about his symptoms, but not one asked about how he was feeling.
It began on the last Friday of August, when Joe woke me up at 4 a.m. “I think I should go to the ER,” he said. He was having severe stomach pain and had been fighting it for a couple of hours while I dozed away. I threw on my clothes, we jumped into the car and, within half an hour, he was in a hospital bed.
They asked about his pain—in the middle of his abdomen, right under his rib cage—and about its severity. He gave it a 7 out of ten. They pumped him with morphine, gave him a “GI cocktail” of an antacid, anesthetic and antihistamine, and did an x-ray. The x-ray showed debris in his bile duct, but was pretty inconclusive as to what that debris was. The internist on call said we could go home, see how Joe felt when the drugs wore off, and call our gastroenterologist for follow up tests, starting with a CT scan. Probably gallstones, he said.
If we had only taken his advice. No, instead we decided that, since we were already at the hospital, Joe might as well have the CT scan right away. And so started our month and a half of medical mess. Along the way, our faith in doctors and the healthcare system in general took as much a beating as we did.
We eventually came to wonder how much a role age played. Joe was 76, an age at which serious things are simply supposed to happen. At the time we began our little journey, Zeke Emanuel, M.D., had written a piece for The Atlantic, which they titled, "Why I Hope to Die at 75." Emanuel didn't actually want to die at 75—he just didn't want fancy and often ineffective life-lengthening treatments as he grew older. In the article, he wrote:
Americans seem to be obsessed with exercising, doing mental puzzles, consuming various juice and protein concoctions, sticking to strict diets, and popping vitamins and supplements, all in a valiant effort to cheat death and prolong life as long as possible. This has become so pervasive that it now defines a cultural type: what I call the American immortal.
I reject this aspiration. I think this manic desperation to endlessly extend life is misguided and potentially destructive. For many reasons, 75 is a pretty good age to aim to stop.
Joe didn't buy this. He planned to outdo his mother, who died at 98 after living in her own home until just a few days before her death, and who remained cogent the entire time. So the docs treating Joe had yet to hear his standard line: “I plan to live to be 100. What are you going to do to make that happen?”
But the docs were focused on shadows on tests, on photos of his gut, not him as a person. It felt like they thought 76 was a pretty good age for him to aim to stop.
So, the tests, the tests, the tests. This one doesn't show enough, so we need to do the next one, which also doesn't show enough, so we need to do one after that, which may or may not be conclusive. Into that machine and then this one, with that pathologist saying this and this pathologist saying that.
The CT scan showed more signs of debris, which they said could be gallstones. But there was a shadow there, and that was troublesome. By “they” I mean the doctor on call, a resident and a couple of interns. They needed a specialist and called a gastroenterologist for his analysis. He read the CT scan and said Joe needed a third test to clarify the diagnosis. This was an MRCP, or magnetic resonance cholangiopancreatography, an MRI that examines the liver, gallbladder, bile ducts, pancreas and pancreatic duct.
For years, Joe had been going to a gastroenterologist he liked, so he asked for the test to be scheduled with that doc. We assumed somebody was listening.
Lesson: Don’t assume. You know all about u and me and asses.
No, as it turned out, the test was ordered by the disembodied doc on the phone who, despite a harrowing prognosis, we never ever met in person. A doc with no obvious empathy who was supported by a nurse with no obvious ability.
Stick with me. You’ll see.
I’ll call him Dr. One and her Nurse Two. Sort of medical Thing One and Thing Two.
The hospital doc on duty gave Joe a prescription for hydrocodone for the pain and sent us on our way, telling him to take it easy. No mention of diet, just a dangerous narcotic. Later, I looked at his release paperwork and realized it was a bunch of general blather; there were no pathology reports, just a note saying he’d had blood tests, but no results of those tests. No instructions for him specifically with his specific problem, no diet recommendations other than to “eat foods you have tolerated well in the past.”
Given that, in the past, Joe’s diet had sent him to the hospital, this was not helpful advice. On our own we researched a gallstone diet and emphasized foods high in fiber and low in fat. Joe also began drinking more water to flush his system.
Two days later, Nurse Two from the GI’s office called and told us the MRCP was scheduled the next Monday at their GI clinic in the suburbs. I wrote down the time and the location. I write everything down—I’m a journalist, so note taking is second nature. Plus, as a health journalist, I realize that either the devil or God is in the details. Either way, it’s good to pay attention.
I asked what doctor scheduled the test. It was Dr. One. I asked why it was not with Joe’s regular doctor. “It’s with Dr. One,” she said simply. OK then. I decided not to push that, as the test was what was important and we figured we’d get back on schedule with the right doctor after that.
Lesson: Everything matters at every step. If something feels wrong, push for a more comfortable resolution. Trust your gut. In this case, literally.
On Monday, Joe headed to the clinic in the suburbs for his MRCP, as Nurse Two had instructed. But nobody there knew anything about him or a test. Yet this was Dr. One’s office. Yes, Nurse Two was his nurse. Finally, they found Joe in the system—he was supposed to be at the hospital downtown, about two miles from our home. Instead he had driven, on Nurse Two’s instructions, about 20 miles out of his way and was late for the test. They did it anyway.
And then we waited to hear from the doc, but it was not in the front of our minds—this did not yet seem like a big deal. I have had mammograms with shadows on them that turned out to be healthy tissue or a problem with the film. We decided that was the case here. Or, of course, gallstones.
On Friday, four days after the test, Nurse Two called. “The test was concerning for cancer,” she said with little introduction or explanation or even decent English. “The doctor will schedule an ERCP.”
What kind of cancer?
What’s an ERCP?
“It's like an endoscopy, but it also goes into the bile duct.”
A quick search of reputable sites—The American Cancer Society and the American Society of Clinical Oncology—told us that this was nothing to mess with. The five-year survival rate for bile duct cancer is from two to 30 percent. Many cases are untreatable, with surgery the best option, although not always possible. Even with successful surgery, tumors often grow back.
But get this: The doctor did not even make the call himself, did not set up an appointment to talk with us in person to soften this blow or to clarify the information. He had his nurse call with a crisp, frightening and, honestly, awkward message that felt like it had been badly translated from Albanian: “The test is concerning for cancer.”
Of course we knew it could be something else—the gallstones—but when the doctor began focusing on cancer, so did we. Nurse Two mentioned no other options and Dr. One, well, he apparently had no interest in actually talking with his patient, so he wasn't about mentioning anything.
I researched a bit more. Bile duct cancer symptoms include jaundice and itching of the skin of the abdomen; the disease is closely associated with cirrhosis of the liver and obesity. Joe had none of these except the itching, which is also a symptom on gallstones. Still, there was that age thing: two-thirds of the people with bile duct cancer are over 65. Yet, this is an extremely rare cancer—fewer than 3,000 people a year are diagnosed with it in the U.S. So the reality is that the great majority of men over 65 do not have bile duct cancer.
His symptoms were vague—he felt a constant fullness and was tired and slightly nauseated. He stopped taking the narcotic and felt a little better, but was still obviously sick. He loves his woodworking shop, yet he didn't even walk through that door. He napped a lot.
We finally called and asked for the pathology report on the MRCP. It detailed the test findings and ended with the pathologist’s impression: “Extensive intrahepatic biliary tract dilations as above would be compatible with clinical statement of cholangiocarcinoma.”
So, yeah, there’s that. To translate:
Cholangiocarcinoma means bile duct cancer.
Intrahepatic means inside the liver, the kind with the worst prognosis, a five-year survival rate from two to 15 percent. Not actually liver cancer, but in the same neighborhood and often treated like it, with much the same prognosis.
This meant that, according to the pathologist, Joe likely had the worst type of bile duct cancer, a pretty bad actor.
I read and reread the report, noting that they started out looking for bile duct cancer in the first place and that the report indicated that the results could, indeed, be what they were looking for. If the doc had asked the pathologist to look for gallstones, I wonder what the results might have been.
It’s like going on a treasure hunt for a Hard Rock Café T-shirt and seeing a Cartier watch but ignoring it because it’s not on the list.
In How Doctors Think, Jerome Groopman, M.D., notes that pathologists are so overloaded with an increased volume of tests that they often focus only on what the doc is specifically looking for, not having the time to look for alternative answers. So, the doc had said to look for bile duct cancer and that’s what the pathologist did. Period.
We needed more information. And we deserved to actually talk to the doctor. I began calling the gastroenterologist. The receptionist said she would give him the message. Sure. I called for three days and finally, when Joe was not at home, Dr. One called back.
He was impatient and brusque: “I am between patients. I don't have much time.”
Well too damn bad, doc!
He was condescending at first, but when I asked direct and specific questions based on having studied the pathology report and having done decent research, he finally softened a bit and explained that it could be inflammation.
OK, that sounds better.
What about gallstones? I ask.
“It doesn't really sound like that. It’s the shadow we’re worried about.” The debris, though, could include gallstones, which could be the cause of the inflammation. I know this because of Dr. Google.
I asked for details on the ERCP, or endoscopic retrograde cholangiopancreatography, which Dr. One had ordered. This consists of a probe with a tiny camera that goes down toward the small intestine then turns back up to the pancreas, liver, and bile duct. In some cases, the doc can actually take out gallstones with an ERCP. It’s also used to biopsy a tumor. In Joe’s case, the emphasis was on the biopsy because the assumption was cancer.
It sounds like a pretty serious procedure, I said.
“It’s minimally invasive,” Dr. One answered. “Most people handle it well.” There are few after effects, he continued blithely, one of them being a five percent chance of pancreatitis.
Whoa. Pancreatitis is a big deal, a potentially fatal illness and a definitely miserable one. It was at that point that we decided we would go elsewhere for a second opinion.
This doc was just too cavalier.
So we made an appointment at a well-respected hospital nearby. We faxed the tests there, got DVDs of the results of the MRI and CT scans to take in person. It was early October by the time we got in.
We met with two doctors at the Big Hospital in the Sky—a gastroenterologist and an internal medicine resident. I expected to go in and have them tell us that our local doc was way off base, that the tests did not show cancer. At all. Not at all. The problem, I envisioned them telling us, was probably gallstones.
Well, that didn't happen. They pretty much agreed with the local doc.
This was our second opinion, by reputedly some of the best docs in the country, and if they agreed that this was likely bile duct cancer, it was hard to ignore the fact that it was likely bile duct cancer. In fact, these docs were even a bit more absolute about it.
At least we met them in person, and they spent serious time with us and answered our questions thoroughly. Nice young men, obviously smart as they could be, they took Joe’s history, examined his tests, and the gastroenterologist —I’ll call him Dr. Martens—told us what the possibilities were:
• Gallstones. This was unlikely because his pain level was too low. He could not have gone for five weeks with gallstones.
•Autoimmune disease. Specifically IgG4-sclerosing disease; in Joe’s case, autoimmune pancreatitis. This was highly unlikely, but we could hope.
•A benign growth. This would be slightly better than cancer, but would require similar treatment.
Dr. Martens drew us pictures of where he thought the tumor was, based on the CT scan. He discussed the implications of Joe not having jaundice—that he only had one blocked bile duct, his left, and the other was working. That was relatively good news, but they would have to do more tests, of course, to determine placement of the tumor and whether it was operable. The doctor was so sure of cancer he scheduled an appointment for us with a liver and bile duct surgeon.
I asked what I should tell our kids and he gave me the following points, which I wrote down:
There is evidence of blockage of part of the bile ducts in the liver.
There is a reasonably high likelihood of a tumor, and that tumor is likely to be cancerous.
Our game plan is surgery, but the tumor is in a crowded area and it might not be possible to get to it without doing damage to other organs.
So that’s what I told the kids. Josh our oldest, was somber and asked few questions. His specialty is geopolitics in the former Soviet Union, so bile duct issues are fairly new to him. He told us he loved us and we hung up. I felt that I should have done a better job of presenting the news. I worried about how he was taking it. He had just started graduate school and his father having a deadly illness could throw off his studies. Ellen, our youngest, asked a lot of questions, including how we were taking it. I told her that her father was pretty amazing and was handling it beautifully. As he was.
“Next time I see Dr. Martens, I guess I won’t be able to ask him how he’s going to help me live to 100,” he said. “Maybe I’ll ask about 90.”
Ellen laughed at that. It felt great to hear that laugh. It felt great to laugh.
But first, more damn tests:
• Another MRI, this one with dye, as the one Joe had taken at our local hospital provided too little information.
• A tumor marker blood test that could perhaps indicate the likelihood of his having the autoimmune disease; it would also test for bile duct cancer, but elevated levels of those specific antibodies could also indicate gallstones.
• An x-ray to make sure his heart was OK for surgery.
• An ERCP that would photograph the bile duct and get a biopsy of the tumor. The same test Dr. One had ordered, but we had more faith in these guys and were more comfortable with having them do it.
We scheduled all but the ERCP for the following two days. We would come back the next week for that.
So, MRI, blood work, and x-ray behind us, we drove back home, trying to process this. “I don't think I want any extreme measures." Joe said. "I think I’ll just say ‘I’ve had a good life’ and enjoy what’s left.”
I agreed and began thinking about what that life might be. “What would you like to do most?” I asked.
“See the kids and the boys,” he said. The boys are two adorable grandsons. Silently, I began to try to imagine what was ahead. I went to the pragmatic stuff first. Our wills were in order. I had power of attorney. I would need to clarify where some things were in Joe’s office, which is not the neatest place in the world, as in it is really, really messy. I could hardly ask him to clean it now. Why hadn’t I gotten him to clean it before? Stop thinking like that.
And how would this illness progress? How sick would he be? How would we keep him comfortable? Could we keep him comfortable? How long, really, did he have left?
What would I do? Stay in this house? Move to Vermont with Ellen and her family? What would it be like to not have this man in my life anymore, the man who is my best friend and my fairly constant companion?
And would the grandsons even remember him, as young as they are? Or would he, at best, be a vague memory?
How must it feel to know you are dying? I never asked Joe that, partially because I didn't want to remind him. And, perhaps, because I didn't really believe this was happening.
I had always assumed he would outlive me. I have no interest in hanging around until I am 100, but I am 8 years younger than him, so statistically he would be the first to go, but I had honestly never thought of that possibility. We had done the type of planning we were supposed to but it all felt pretty theoretical.
This was real. He was facing the end of his life and I was facing widowhood. Sort of difficult to think about much else.
Fortunately, we had other things to do. I was giving a talk on breast cancer in a city about 45 minutes away and Joe planned to go with me. He likes to watch me talk, which is sweet. The talk went well and it was a beautiful autumn day as we drove home.
Then my phone rang. It was the Big Hospital in the Sky. I answered.
“This is Dr. Martens, calling for Joseph.”
I knew it was good news, just knew it. Still, I wish I had put it on speakerphone so I could have heard the doc’s side of it. What I heard from Joe was enough.
Clearly it was great news. Super, even.
The doc had called as soon as he read Joe’s MRI. He no longer thought it was cancer—there was really no evidence of malignancy. He was fairly certain it was gallstones.
I whooped and Joe grinned—sort of typical of our different responses. We buzzed down the highway, our hearts light as air.
Bless the doc for calling so soon. Bless him, bless him. He was even forgiven for scaring the socks off us. Sort of.
I called the kids, who were delighted. I emailed friends. One wrote back, “I have never been so happy about gallstones in my life!” Close friends called us because they were so elated.
“We couldn't think of anything else,” our friend Susan said.
“I just had a spot taken off my hand and the results came back that it was not cancer,” Dick said. “And I felt so guilty!”
Joe was going to live. He had gallstones. All along, gallstones. Blessed, blasted gallstones.
But first, Joe needed the ERCP, which he did, in fact, tolerate well, and which strongly indicated that it was not cancer. The docs cleared the gallstones from his duct and took a biopsy of the tissue, just to be sure, but they did not expect it to come back as cancer.
It didn't. All clear. No signs of cancer.
The appointment with the surgeon was cancelled and we once again headed home.
A week later, Dr. Martens called to give us an update, noting that Joe had “a lot—a lot—of gallstones” and that they had been there “a long, long time.” Scientific terminology, that. He was now stone free, although there was damage to the duct resulting in narrowing. “We got everything out they could see.”
He wanted to do another MRI in six weeks—why stop with the joy of tests now?— to assure that all stones were gone. If any remained, they would do another ERCP.
I asked Dr. Martens the question that had been keeping me up at nights:
“Why were so many doctors so sure it was cancer?”
“Two reasons,” he answered. “Lack of pain. And age. These tumors become more common as people age.”
So, yes, it was an age thing, but more in terms of statistical analysis and not necessarily in a heartless you-are-old-so-it-is-time-to-die way. When you’re in the middle of it, though, it is hard to see the difference.
Friends have asked if any of the doctors have apologized for what they put us through. Not a one. Not even close. I am not sure why. Arrogance? That seems a bit too pat, a label we paste on doctors too easily, although many of them might indeed deserve it, especially Doc One. Fear of a lawsuit? Possibly. But what would we sue for? Insensitivity? No civil law against that. And were they actually insensitive or just scientific? Their job, as they saw it, was to cure the disease. To us, it was to cure the patient.
Doctors have gotten so reliant on tests that they seem to ignore the person in the machine, a person who loves other people and who is loved, a person who wants to live a full life, a father, husband, mother, daughter, sister, brother, friend. Tests can find diseases that doctors can’t, but only if doctors are looking in the right direction. Obviously, they can also send docs off in the weeds if some human somewhere isn’t asking, “What about?” and “What if?”
Part of this is our problem—we want a quick diagnosis and a complete cure. We believe in the mystic wisdom of tests. But there is no magic there and even the science can be a bit uneven.
The bottom line of good care is a caring doctor. But when docs are chasing shadows on film, they begin to care about those images more than the flesh and blood they represent.
I often thought, during all this, that the rarity of Joe’s illness might have had its own allure—assuming of course, that he actually had that illness. Imagine the challenge. Gallstones are boring—anybody can cure those. Bile duct cancer? That takes a high-level specialist.
And because one specialist started us on a path, the rest followed.
Yet not a single doctor mentioned diet to Joe. They did their tests and their procedures—their science. But they ignored the one thing that we could control. I strongly believe that diet is connected to every health issue and I know that a lot of doctors don't agree. But docs who treat the digestive system? Seriously, shouldn't diet be the first topic there?
Who knows, maybe they figured he was too far gone and all they could do was control the pain. And asking him how he was feeling overall would just open up a door too many docs clearly don't want to walk through.
It’s been three months since the ERCP that removed the gallstones and Joe is back to his energetic self. As I write this, his saw is buzzing in his shop under my office. He continues to watch his diet, but lets himself have a couple of French fries every now and then. His first attack came after eating ice cream, so he is staying away from that treat for now.
But the costs!. By the time we add the doctors’ bills, hospital costs, tests, and our travel out of state, these will end up being $50,000 gallstones. Our insurance is taking care of most of the medical costs—so thank you all for that. And, from all I can tell, these tests and this treatment are standard procedure, even for gallstones in the bile duct. So maybe we would have needed to go through this same sequence no matter what. Having a doctor or nurse by our side through this sure would have helped. Instead, we felt it was us against the healthcare system, challenging and questioning and second-guessing the folks whose job it is to help us. And trying to undo the damage they have done to our lives.
Postscript: We have since found a local gastroenterologist who is quite wonderful. He explained that Joe’s bile duct actually forms stones—these don't come from the gallbladder—and that it's uncommon for stones to lodge where his do, which might be why docs thought it was cancer. He has been in contact with the doc at the Great Hospital in the Sky and both have been exceptionally generous with their time and expertise. Joe continues to feel better and is regaining the weight he lost in all this.
And our new doc apologized—twice—for all we have been through, even though he wasn't a part of it.
So there’s that.